Minister refuses to negotiate directly over cost of CF treatment

Plans by Minister for Health Simon Harris to join up with other countries in seeking price reductions for Orkambi will take years to realise, according the manufacturer of the cystic fibrosis drug.

US firm Vertex Pharmaceuticals says the initiative will do nothing for CF patients now who are waiting to hear whether the Government will pay for the drug.

Mr Harris said he plans to seek international cooperation on securing access for patients to new treatments where “exorbitant” prices are being sought when he attends a meeting of EU health ministers and pharma companies in Lisbon on Wednesday.

Mr Harris has rejected a call by Vertex to become directly involved in price talks on the cystic fibrosis drug.

The company wrote to Mr Harris seeking his intervention in negotiations on providing the drug to Irish patients. However, the Minister says it is for the HSE to negotiate on the reimbursement of drugs.

The HSE baulked at the €159,000 per patient fee originally sought by Vertex, and said this would result in an overall cost of almost €400 million a year.

Vertex says it has dropped its price significantly during talks, but has declined to say by how much for confidentiality reasons. The HSE says the amount sought by the company is still a multiple of the €30,000 a patient it says it can afford.

Cystic fibrosis patients plan to protest outside the Dáil on Wednesday against the HSE’s decision, due to be formally announced next week, not to fund the drug.

‘Life-lengthening drug’

“We call on the Minister to use his ministerial powers to intervene to ensure that Orkambi is made available in Ireland for the 550 patients who stand to benefit from this life-lengthening drug,” said

Philip Watt

, chief executive of Cystic Fibrosis Ireland.

In an interview with The Irish Times, Vertex said it has held six meetings with the HSE in five months and "each time we've come back with a new proposal".

"Our proposal now is a long, long way from the numbers being quoted publicly," said Rebecca Hunt, vice-president for international corporate affairs.

“We just want to sit down and have a sensible conversation with decision-makers in the HSE, and with the Minister if that’s appropriate, and get to a decision.”

Asked about the salary paid by Vertex to its chief executive Jeffrey Leiden – he was paid $46 million in 2014 and $28 million last year – Ms Hunt replied: "I don't see that as relevant."

Mr Harris has written to counterparts in four other countries currently considering whether to approve Orkambi to see if they could collaborate on achieving a cost-effective price.

However, Vertex dismissed this initiative, saying it would take years to achieve. “The clock is ticking. This is about helping people with CF today,” said Ms Hunt.

Invested massively

Vertex has invested massively in research and development and has yet to make a profit, she pointed out. “It has taken us 17 years to get Orkambi into the hands of patients.”

Its scientists screened 125,000 compounds – for anywhere between three days and three months – to find out which one was right for CF patients, she said.